Sunday, 20 July 2014

Trying To Keep Positive

This morning I did something I swore I'd never do. I complained loudly and bitterly about having to spend an hour of my time making up this week's meds. How times have changed and how quickly we forget. I could never go back to making it up every night or changing it twice a day that's for sure. To be honest I am getting quicker at it every week. I've worked out which angle to hold the bottles to ensure I get every last little bit. I've worked out how to arrange the things I need on to the sterilised sheet so than none roll off when I pick something out of the pile and I've worked out a routine which is so efficient it is just like a factory line. I'm down to one cassette every 6 minutes now. Just like everything else it is all in the planning.

Yesterday I still suffered. It wasn't as hot, so I wasn't as bad but I still found it tough going. The problem is that once something upsets you equilibrium it takes a few days to settle again. So far today has been lovely and, relatively, cool and I'm beginning to feel a lot better. Unfortunately there is still a lot of humidity so that isn't helping. I did manage to eat more yesterday and I kept up my liquid intake. However this increase in drinking is also causing problems and so yesterday I gave in and took an extra diuretic. The effect and relief were simultaneous and almost immediate. In less than an hour I went from looking nine months pregnant to three months pregnant and my breathing improved significantly. I am going to take an extra tablet again today in the hope I stop piling more water on and going back to square one.

Last night I spent a very pleasant evening watching the concert at Edinburgh Castle. I was particularly anxious to see Culture Club and Paloma Faith.

The concert kicked off with the Kaiser Chefs, which was OK but really not my type of music and when they were followed by Jessie J and Rizzle Kicks I busied myself in the kitchen making drinks and snacks. Then Bill Bailey arrived and things began to look up. However I was deeply disappointed with the acts I so longed to see. Paloma Faith mumbled so much I had no idea what it was she was singing. The two from the Happy Mondays gave a brief and welcomed relief with one of my favourite songs and then it was back to the dross with an American group I'd never heard of. I was beginning to get the idea that there were very few Scots involved in this concert. Even the present was Welsh, surely they could have found someone a bit closer to home.

Culture Club lacked something, I don't know what but something. They'd messed with the arrangement of 'do you really want to hurt me' and I was disappointed. Then they wheeled out Ronnie Corbett for no apparent reason other than he had a vague Scottish connection. Poor bloke he really didn't look as though he knew where he was half the time and the only funny thing he did was step on Alex Jones' dress.

The we reached the headline act, Smokey Robinson. Now in his time he was a great singer and I have no doubt he has enormous talent. At first I didn't recognise him, he's had so much work done his face appeared frozen in an awful rictus grin. Sadly nothing could be done with the aging vocals and, although his songs were recognisable, they lack the power and in some areas, the tuning of his earlier efforts. Why is it that, once great, singers insist on humiliating themselves in front of millions when they become pensioners? Paul McCarthy's done it, Mick Jagger continues to do it, as does Madonna and Debbie Harry.

Now don't get me wrong, it is nice to see these blasts from the past on occasion but it really should be checked on whether they really are still up to the job. Aging of the vocal chords is a natural process, as is the loss of ability to hear a wide rang of notes. Unfortunately science has yet to be able to turn the clock back in these areas, and so performers are rarely able to sing the songs that made them famous quite so vigorously or so accurately. Sometimes it's best just to stand and wave and keep your mouth shut. Seriously guys there comes a time when you just have to stop.

So it was a late visit to bed but being so tired I slept like a baby and feel so much better for it.

Today has been designated my 'do nothing' day. I'm putting on a film this afternoon and have chosen 'Space Cowboys' to pay tribute to James Garner who died earlier today. He plays an aging priest and is possibly the funniest character in the film.

Talking of paying tribute. My thoughts and prayers go out to the innocents of flight MH17.

So tomorrow I'm back to work. It is not going to be a great day for me. Apart from being a Monday, and we all know what those feel like, tomorrow marks nineteen months on the transplant list. Currently in the UK there are sixteen people waiting for a heart and bilateral lung transplant and I don't rate my chances much. However I'm told by the well meaning that I must stay positive. Well I'll try but it is going to be a hard old slog tomorrow.

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Welcome to my blog.

This blog is essentially so that my widely scattered family and friends can keep up with all that is happening since I was diagnosed with Pulmonary Hypertension in 2007. If reading because you also have PH or know someone who does, I hope this blog will show that it is possible to enjoy life with a serious illness. I also hope it will offer some support and information along the way. Since starting this blog I have now been accepted on the list for transplant.

Take care

Hazel

About Me

I have been married for 28 years and have two strapping sons. I am small but universally described as scary, determined and tenacious. Diagnosed with Pulmonary Hypertension in 2007 I am generally an optimist and believe everything happens for a reason.